Sexuality for the Woman With Cancer Cancer, sex, and sexuality

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1 Sexuality for the Woman With Cancer Cancer, sex, and sexuality When you first learned you had cancer, you probably thought mostly of survival. But after a while other questions may have started coming up. You might be wondering How normal can my life be, even if the cancer is under control? Or even How will cancer affect my sex life? It s important to know that you can get help if you are having sexual problems after cancer treatment. There are many good treatments available. Sex and sexuality are important parts of everyday life. The difference between sex and sexuality is that sex is thought of as an activity something you do with a partner. Sexuality is more about the way you feel about yourself as a woman, and is linked to intimacy or your need for caring, closeness, and touch. Feelings about sexuality affect our zest for living, our self-image, and our relationships with others. Yet patients and doctors often do not talk about the effects of cancer treatment on a woman s sex life or how she can address problems she s having. Why? A person may feel uneasy talking about sex with a professional like a doctor or even with a close sex partner. Many people feel awkward and exposed when talking about sex. This information is for all women who have or have had cancer regardless of their sexual orientation. We cannot answer every question, but we ll try to give you enough information to help you and your partner have open, honest talks about intimacy and sex. We will also share some ideas about talking with your doctor and your cancer care team. Lastly, we ll give you a list of other places to get help in the To learn more section. These are other good sources of more information. Keep in mind that sensual/sexual touching between you and your partner is always possible, no matter what kinds of cancer treatment you ve had. This might surprise you, especially if you are feeling down or have not had any sexual touching or activity for a while. But it s true. The ability to feel pleasure from touch almost always remains. The first step is to bring up the topic of your sex life with your doctor or another member of your health care team. You need to know how your treatment will affect nutrition, pain, and your ability to return to work. You also have the right to know how your treatment could affect your sexual function.

2 What is a normal sex life? People vary a great deal in their sexual attitudes and practices. This makes it hard to define normal. Some couples like to have sex every day. For others, once a month is enough. Many people see oral sex (using the mouth or tongue) as a normal part of sex, but some believe it s not OK. Normal for you and your partner is whatever gives you pleasure together. Both partners should agree on what makes their sex life enjoyable. It s common for people coping with cancer to lose interest in or desire for sexual activity at times. Doubts and fears, along with cancer and cancer treatment effects, can make you feel less than your best. Sometimes concerns about your health may be much greater than your interest in sexual activity. But as you get back to your usual routines, your desire for intimacy may return, too. It s OK to be interested in sex throughout your life. There are some who think sex is only for the young, and that older people lose both their desire for sex and/or their ability to perform. Those beliefs are largely myths. Many men and women can and do stay sexually active until the end of life. (See the To learn more section for more on sex and aging.) Still, it is true that sexual response and function may change over time with age. For example, more than half of men over age 40 have at least a little trouble with erections. For some of these men the problem is severe. Many women also notice changes as they get older, sometimes even before menopause begins. A decrease in sexual desire and problems with vaginal dryness may increase during and after menopause. Sometimes, sexual problems center around anxiety, tension, or other problems in a relationship. Other times, they may be the result of a physical condition, a medical condition, or medicines that cause or worsen sexual difficulties. But most symptoms can be treated. We now have medicines, therapy, surgery, and other treatments that can help people deal with most kinds of problems they may have. If you want to keep your sex life active, you can likely do so. If you re in a relationship and one of you has a sexual difficulty, it affects both of you. If you are working on sexual problems, it works best when your partner can be part of the solution. What is a healthy sexual response? The sexual response has 4 phases: Desire Excitement Orgasm Resolution

3 A person usually goes through the phases in the same order. But the sexual response can be stopped at any phase. For instance, you don t have to reach orgasm each time you feel the desire for sex. Desire is having an interest in sexual activity. You may just think about sex, feel attracted to someone, or be frustrated because of a lack of sex. Sexual desire is a natural part of life from the teenage years onward. Excitement is the phase when you feel aroused or turned on. Touching and stroking feel much more pleasurable and intense when a person is excited. Excitement also results from sexual fantasies and sensual sights, sounds, scents, and tastes. Physically, excitement means that: The heart beats faster. Blood pressure goes up. Breathing gets heavy. More blood is sent into the genital (or private ) area, and the whole area, including the clitoris, swells. (In a man, the surge of blood creates an erection, or a stiff penis. In a woman, blood flow to the female genitals is called engorgement.) The vagina becomes moist and gets longer and wider, opening up like a balloon. The skin of the genitals ( private parts ) turns a deeper color of red. The body may sweat or get warmer. Orgasm is the sexual climax. In both women and men, the nervous system creates intense pleasure in the genitals. The muscles around the genitals contract in rhythm, sending waves of feeling through the body. Men ejaculate (or release) semen when these muscles contract. The person feels pleasure and satisfaction. Resolution occurs within a few minutes after an orgasm. The body returns to its unexcited state. Heartbeat and breathing slow down. The extra blood drains out of the genital area. Mental excitement subsides. If a person becomes excited but does not reach orgasm, resolution still takes place but more slowly. It s not harmful to become excited without reaching orgasm, though it may feel frustrating. Some women and men may feel a mild ache until the extra blood leaves the genital area. Refractory period. Men have a certain amount of time after orgasm when they are physically unable to have another orgasm. This time, called the refractory period, tends to get longer as a man ages. A man in his 70s may need to wait several days between orgasms. Women do not have a refractory period. Many can have multiple orgasms, one after another, with little time in between.

4 How the female body works sexually The natural cycles of the mature female body In order to talk about sex, it helps to know about the structures and hormones that are also involved with having children. Doctors call this the reproductive system. During the years when a woman can have children, her ovaries take turns each month producing a ripe egg. When the egg is released, it travels through a tube (the fallopian tube) into the uterus. A woman can get pregnant (naturally) if a sperm cell travels through the opening in the bottom of her uterus (which is called the cervix) and joins the egg. The cervix is the gateway for sperm to get into the body and for a baby passing out of the body at birth. An egg remains fertile only for about 2 days. If a woman does not become pregnant at that time, the rich lining of the uterus that has built up over the past weeks passes through her cervix and into the vagina as menstrual flow. If she does become pregnant, the lining stays in place to feed the growing baby. These regular cycles the mature female body goes through each month are controlled by hormones. Hormones The ovaries usually stop producing eggs and greatly reduce their hormone output around age 50, though the age varies from one woman to the next. This is called menopause or the change of life. Some women fear that their sexual desire will go away with menopause. But for many women the drop in ovarian hormones does not lessen sexual desire at all. The hormones that may help a woman feel desire are called estrogens and androgens. Androgens are thought of as male hormones, but women s bodies also make small amounts of them. About half of the androgens in women are made in the adrenal glands that sit on top of the kidneys. The ovaries make the rest of a woman s androgen. After a woman goes through natural menopause, the adrenal glands keep making hormones. There s usually enough androgen even after the ovaries stop making it to feel sexual desire. Most women still desire sexual activity even while their bodies are going through changes in hormone levels, such as during the menstrual cycle, pregnancy, menopause, or when taking birth control pills. The role of estrogen Estrogen helps keep your vagina moist and flexible, and helps it change when you are sexually aroused. When a woman is not excited, her vagina is not an open tunnel, as

5 some think. Instead, it stays relaxed and folded together so that its walls touch each other. As a woman starts to feel aroused, the vagina gets longer and wider. The cells lining the vagina secrete droplets of fluid (or lubricant) that make the vagina slippery. These changes depend on the hormone estrogen. If a woman s estrogen levels are low, as they might be after menopause, these changes in the vagina may take place more slowly. Without estrogen: Your vaginal lining thins. Your vaginal walls lose some of their ability to stretch. Your vagina may stay somewhat tight and dry, even if you are very excited. This is called vaginal atrophy. Female orgasm As a woman becomes sexually excited, her nervous system sends signals of pleasure to her brain. If she is stimulated, for instance, by touching, the signals get stronger and may trigger the orgasm reflex. During orgasm, the muscles around the genitals contract in rhythm. The sudden release of muscle tension sends waves of pleasure through the genital area and sometimes over the entire body. Afterward, a woman feels relaxed and satisfied. A woman s orgasms may change from time to time. Sometimes she may have no orgasm, or she may have one with each sexual encounter. Sometimes, she may have multiple orgasms, one after the other. As part of the natural aging process, orgasms may take longer to reach. It may also take more stimulation to achieve them. How orgasms happen An orgasm is a natural reflex, but most women need some experience in learning to trigger it. It s often harder to reach orgasm during intercourse than it is through the stroking of the outside genital area, usually on or near the clitoris. About 1 in 3 American women do not reach orgasm without some extra touching in addition to intercourse. Orgasms during intercourse are not proven to be better than other orgasms. Also, orgasms where you and your partner climax at the same time may not be a realistic goal for many couples. There are many sources of excitement that lead to orgasm. They differ for each woman. A few women can reach orgasm just by having a vivid fantasy about sex or by having their breasts stroked. Others have had an orgasm during a dream while asleep. But most women need some caressing of their genitals to reach orgasm. The areas of a woman s genitals (see illustration) that are most sensitive to touch are the clitoris and the inner lips. The outside part of the genital area (called the vulva) includes the outer lips, inner lips, the clitoris, and the entrance to the vagina. The outer lips are filled with spongy tissue. They protect the delicate inner lips and clitoris. The opening of

6 the urethra (the tube that carries urine from the bladder) is between the inner lips and behind the clitoris. The anus (opening of the bowels) is behind the vagina. When a woman becomes sexually excited, the entire genital area swells. It also turns a darker pink as blood rushes in under the skin. A woman s genital area Many women reach orgasm most easily when the clitoris is stroked. Like a penis, the clitoris has a head and a shaft. Its function is to send messages of pleasure to the brain when it s stroked. The head of the clitoris is so sensitive that it can become sore from direct rubbing that s either too fast or too hard. Soreness can be prevented by using a lubricant and by stroking or touching close to, but not on, the head of the clitoris. Other areas, including the outer lips and anus, can also give a woman pleasure when stroked. Each woman s sensitive zones are a little different. The opening of the vagina contains many nerve endings. It s more sensitive to light touch than the deep end of the vagina. For some women, the front wall of the vagina (bladder side) is more sensitive to pressure during sex than the back wall. Some sex therapists suggest that stroking an area about 1 to 4 inches deep on the front wall of the vagina helps some women reach orgasm during intercourse.

7 Keeping your sex life going despite cancer treatment Here are some points to keep in mind as you continue your sex life during or after cancer treatment. Learn as much as you can about the possible effects your cancer treatment may have on your sexuality. Talk with your doctor, nurse, or any other member of your health care team. When you know what to expect, you can plan how you might handle those issues. Keep in mind that, no matter what kind of cancer treatment you have, you ll still be able to feel pleasure when you are touched. Few cancer treatments (other than those affecting some areas of the brain or spinal cord) damage the nerves and muscles involved in feeling pleasure from touch and reaching orgasm. For example, women whose vaginas are painfully tight or dry can often reach orgasm through stroking of their breasts and outer genitals. For people with cancer, sexual touching is often satisfying. Pleasure and satisfaction are possible even if some aspects of sexuality have changed. Try to keep an open mind about ways to feel sexual pleasure. Some couples have a narrow view of what sexual activity means to them. If both partners cannot reach orgasm through or during penetration, some may feel disappointed. But for people being treated for cancer, there may be times when intercourse is not possible. Those times can be a chance to learn new ways to give and receive sexual pleasure. You and your partner can help each other reach orgasm through touching and stroking. At times, just cuddling can be pleasurable. You could also continue to enjoy touching yourself. Do not stop sexual pleasure just because your usual routine has been changed. Try to have clear, 2-way talks about sex with your partner and with your doctor. If you are too embarrassed to ask your doctor whether sexual activity is OK, you may never find out. Talk to your doctor about sex, and tell your partner what you learn. Otherwise, your partner might be afraid that sex might hurt you. Good communication is the key to adjusting your sexual routine when cancer changes your body. If you feel weak or tired and want your partner to take a more active role in touching you, say so. If some part of your body is tender or sore, you can guide your partner s touches to create the most pleasure and avoid discomfort. Boost your self-esteem. Remind yourself about your good qualities. If you lose your hair, you may choose to wear a wig, hat, or scarf if it makes you feel more comfortable. Some women prefer to wear nothing on their head. You may wear a breast form (prosthesis) if you have had a breast removed. Do whatever makes you feel good about yourself. Eating right and exercising can also help keep your body strong and your spirits up. Practice relaxation techniques, and get professional help if you think you are depressed or struggling.

8 How cancer treatment affects sexual desire and response Lack of desire Both men and women often lose interest in sexual activity during cancer treatment, at least for a time. At first, concern for survival is so great that sex may not be a priority. This is OK. Few people are interested in sex when they feel their lives are being threatened. When people are in treatment, loss of desire may be caused by worry, depression, nausea, pain, or fatigue. Cancer treatments that disturb the normal hormone balance can also lessen sexual desire. If there s a conflict in the relationship, one partner or both might lose interest in sex. Any emotion or thought that keeps a woman from feeling excited can interfere with desire for sex. Distracting thoughts can keep her from getting aroused. Her vagina then stays tight and dry, which can make vaginal penetration uncomfortable or painful. Many people who have cancer worry that a partner will be turned off by changes in their bodies or by the very word cancer. These worries can affect desire, too. Pain Pain is a common problem for women during vaginal penetration (and/or intercourse). It s often related to changes in the vagina s tissues or size and vaginal dryness. These changes can happen after pelvic surgery, radiation therapy, menopause, or treatment that has affected a woman s hormones. Sometimes the pain sets off a problem called vaginismus. If a woman has vaginismus, the muscles around the opening of the vagina become tense without the woman being aware of it. This makes vaginal penetration difficult. Pushing harder increases the woman s pain because her vaginal muscles are clenched in a spasm. Vaginismus can be treated with counseling and some special relaxation training. These treatments are described in the section called Dealing with sexual problems. Premature menopause Another common way that cancer treatment can affect a woman s sex life is by causing menopause earlier than expected. This is called premature menopause. Symptoms are often more abrupt and intense than the slow changes that happen during a natural menopause. When a woman s ovaries are removed as part of a cancer surgery, or when the ovaries stop working because of chemotherapy or radiation to the pelvis, the loss of estrogen can cause hot flashes and vaginal atrophy (the vagina becomes tight and dry). Some women can take replacement hormones to help these problems. Women with cancers of the breast or uterus usually cannot take estrogen, but they may benefit from some of the suggestions discussed in the section called Dealing with sexual problems. Women who have premature menopause sometimes have low androgen levels. This may be linked to lower sexual desire, but this link is not clear. Androgen (testosterone)

9 hormone therapy has been shown to improve sexual function, but there are safety concerns that have kept the FDA from approving testosterone supplements for this purpose. Testosterone has not been studied in women with cancer. If you are thinking of using hormones, it s important to talk with your oncologist or nurse to learn about the benefits and possible risks of hormone therapy. Orgasm Women are usually able to have orgasms after cancer unless cancer or its treatment has damaged the spinal cord and caused the genital area to be numb. But even with spinal cord damage, there s evidence that orgasm is possible, at least in some women. Sometimes problems like pain during intercourse may distract a woman from reaching orgasm. In some cases, a woman might need to try different positions or types of genital touching. She might also need to practice having orgasms alone before going back to sex with a partner. Effects of pelvic surgery for cancer on sexual function Many different organs may be affected in pelvic surgery for cancer. The female genital and reproductive organs include the uterus (or womb), cervix (the entrance to the womb at the top of the vagina), fallopian tubes, ovaries (the organs that produce eggs and hormones), vagina, vulva, and clitoral area. The bladder (the storage area for urine) and rectum (the bottom end of the intestines) are also found in the pelvic area.

10 Female genital and reproductive organs This section reviews some of the more common types of surgery used to treat certain cancers and the ways they can impact your sex life. Radical hysterectomy Radical hysterectomy is an operation done to treat some cancers of the cervix. The surgeon takes out the uterus and the ligaments (tissue fibers) that hold it in place in the pelvis. The cervix and an inch or two of the deep vagina around the cervix are also removed. A hysterectomy for uterine or ovarian cancer removes less tissue. After taking out the cervix, the surgeon stitches the vagina at its top. Some fluid drains from the vagina during healing. The top of the vagina soon seals with scar tissue and becomes a closed tube. The vagina does not, as some women fear, become an open tunnel into the pelvis. The ovaries may or may not be removed If a woman is under the age of 40, the surgeon will often try to leave an ovary or part of one during a hysterectomy. Even one ovary can produce enough hormones to keep a woman from going through early menopause. Because the uterus is removed, a woman will not have menstrual periods and she will not be able to carry a pregnancy. If a woman is between 40 and 50 when she has surgery, doctors weigh the benefits of removing both ovaries to prevent ovarian cancer against the costs of causing sudden early menopause. Women should discuss these choices with their doctor before surgery. Many cancer centers have sexual health programs where trained health care professionals (gynecologists and sex therapists) can help women with any concerns. Women can also

11 talk with other women before surgery so they can discuss their concerns about how surgery will affect their sexual function. A surgeon most often removes both ovaries in women over the age of 50 having this surgery. Effects of hysterectomy on bladder function A radical hysterectomy can affect a woman s ability to pass urine while the nerves in the tissue around the uterus are recovering from surgery. However, with new surgical techniques and nerve-sparing surgery, problems like this are less common. Some doctors may leave a catheter in place for a few days after surgery to reduce urinary problems. If a woman still cannot fully empty her bladder a few weeks after surgery, she may have long-term damage. To prevent urinary tract infections, she may be taught to slip a small tube, called a catheter, through the urethra and into the bladder to drain out the remaining urine. This is called self-catheterizing. A few women may need to do this several times a day for the rest of their lives. If you are self-catheterizing, make sure your bladder is empty before intercourse to help prevent urinary tract infections or discomfort during sex. Effects of hysterectomy on sexual function Hysterectomy does not usually change a woman s ability to feel sexual pleasure. The vagina is shortened, but the area around the clitoris and the lining of the vagina generally stay as sensitive as before. Some women feel less feminine after a hysterectomy. They may view themselves as empty, or not feel like a real woman. Such negative thoughts can keep women from thinking about and enjoying the sexual function that they still have. A trained therapist often can help with such concerns. If cancer is causing pain or bleeding with vaginal penetration, a hysterectomy can help stop those symptoms and actually improve a woman s sex life. The vagina might be shorter after surgery, but couples usually adjust to this change. Extra time spent on caressing and other forms of foreplay can help ensure that the vagina has lengthened enough to allow penetration. It s also important for the vagina to have moisture to allow the tissues to stretch and move. (See the section called Vaginal dryness. ) If the vagina seems too shallow, there are ways a woman can give her male partner the feeling of more depth. For instance, she may spread some lubricating gel on her outer genital lips and the tops of her thighs and press her thighs together during intercourse. She can also cup her hands around the base of her partner s penis during intercourse. Orgasm after radical hysterectomy Women who have had a radical hysterectomy sometimes ask if the surgery will affect their ability to have orgasms. This has not been studied a great deal, and there isn t as much information as we d like. One study in Denmark looked at the effect of radical

12 hysterectomy on sexual function by comparing women who had the surgery to women who hadn t. The women had the surgery for stage I or stage IIA cervical cancer. (This means that the cancer had not spread into the tissues next to the cervix, even though it may have grown into the upper part of the vagina.) Just after the surgery, more than 1 in 10 women noticed problems with lubrication and pain during sex. Almost 8 in 10 women reported little or no interest in sex. Compared to women who didn t have surgery, about twice as many reported problems reaching orgasm. Nearly 1 in 5 said that their vaginas felt too small. The good news is that most of the reported problems were gone by 6 months after the surgery. By the end of 2 years, 9 out of 10 women were back to having sex. At that point, the number of women who usually had orgasms during sex was about the same as that of the women who hadn t had surgery. Sex problems are likely to be somewhat worse and last longer for women who have pelvic radiation along with radical hysterectomy. See the section called Sex and pelvic radiation therapy for more on this. Radical cystectomy A radical cystectomy is done to treat bladder cancer. This means the surgeon removes the bladder, uterus, ovaries, fallopian tubes, cervix, front wall of the vagina, and the urethra. Although women who have this surgery are often past the age of menopause, many still have active sex lives. If you have bladder cancer, talk with your doctor about surgery that s right for you. The most common type of radical cystectomy can result in less ability to have orgasms in some women. It can also cause less lubrication, as well as pain during vaginal penetration. Some women report less desire for sex. But some things can be done during surgery to help preserve female sexual function (see below). Vaginal reconstruction after radical cystectomy Radical cystectomy often removes half of the vagina, but penetration is still possible. Surgeons sometimes rebuild the vagina with a skin graft. More commonly, they use the remaining back wall of the vagina to rebuild the vaginal tube. There are pros and cons with both types of vaginal reconstruction. Vaginal penetration of a narrow vagina may be painful at first. This is especially true if a woman has had radiation to her bladder, which makes the vaginal walls less elastic. It s easier to start intercourse when the vagina is shorter and wider. But with a shorter and wider vagina, movement may be awkward because of the lack of depth. Surgeons try to spare as much of the front vaginal wall as possible to help avoid this problem. Vaginal insertion can be made less painful by using lubricating gels on anything that s going into the vagina. Vaginal moisturizers, replacement hormones, and vaginal dilators can also help to treat vaginal pain. See the section called Preventing pain during sex.

13 Sex without vaginal reconstruction If your vagina is short because it hasn t been reconstructed, you may still enjoy sexual activity. Certain sexual positions, like those where the partners are side by side or with you on top, limit the depth of penetration. Also, you can spread lubricating gel on your outer genital lips and the top of your thighs as you press your thighs together during vaginal penetration. If intercourse or vaginal penetration remains painful, a couple can still reach orgasm by touching each other with their hands. Orgasm after radical cystectomy Many women who have had the front wall of the vagina removed as part of a cystectomy say that this has little or no effect on their orgasms. But others say that they were less able to have orgasms. Women have 2 nerve bundles, which run along each side of the vagina, and it s easy to damage these nerve bundles when removing the front of the vagina during radical cystectomy. Small studies have suggested that women who had surgery that preserved these nerve bundles had much better sexual function after surgery than those whose nerve bundles were removed or cut. Talk with your doctor about the surgery that is planned and whether these nerves can be left in place or preserved during surgery. This can increase your chance of having orgasms after surgery. Another possible problem that can happen during radical cystectomy is that the surgeon takes out the end of the urethra where it opens outside the body. This can make the clitoris lose a good deal of its blood supply and may affect some parts of sexual arousal remember that, like the penis, the clitoris fills with blood (engorgement) when a woman is excited. Talk with your surgeon about whether the end of the urethra can be spared, and how that may affect your clitoral function. It s not always necessary to remove the end of the urethra when you have surgery for bladder cancer. Urostomy Women who have had a radical cystectomy will also have an ostomy. An ostomy is an opening on the woman s belly (abdomen) where waste can pass out of the body. Since this is an opening for urine after the bladder is removed, this type of ostomy is called a urostomy. The urine flows through the urostomy into a plastic pouch, which fits into a plastic face plate glued to the skin around the ostomy. For ideas on how to manage an ostomy during sex, see Urostomy, colostomy, or ileostomy under the section called Special aspects of some cancer treatments. Some women now have continent ostomies that stay dry and are emptied with a catheter. (If you would like to read more about urinary ostomies, see our document called Urostomy: A Guide. The To learn more section has more information.) Abdominoperineal resection Abdominoperineal (AP) resection for colon cancer is surgery that removes the lower colon and rectum. It also creates a colostomy so that stool can pass out of the body. There

14 are many different ways to do AP resections. In a younger woman, just the colon and rectum may be removed. But sometimes the uterus, ovaries, and even the rear wall of the vagina must be removed, too. The remaining vaginal tube must then be repaired with skin grafts or with a flap made of skin and muscle. AP resection does not damage the nerves that control the feeling in a woman s genitals and allow orgasm. Some women may notice vaginal dryness, especially if their ovaries were removed. If so, a water-based gel lubricant can help make vaginal penetration more comfortable. Regular use of a vaginal moisturizer can also help improve vaginal dryness and make the tissues more flexible. (See the section called Vaginal dryness for more on these products.) Intercourse in certain positions may be uncomfortable or even painful. Without a rectum, the vagina becomes scarred down to the sacrum (tailbone). A couple may need to try different positions to find one that works for them. If a skin graft or flap was used to repair the vagina, the section called Vaginal reconstruction after total pelvic exenteration in the Total pelvic exenteration section may be helpful. For suggestions on how to manage an ostomy during sex, see Urostomy, colostomy, or ileostomy under the Special aspects of some cancer treatments section. (If you would like to read more about colostomies, see our document called Colostomy: A Guide. The To learn more section has more information.) Surgery for cancer of the vulva (vulvectomy) Cancer of the vulva is sometimes treated by removing all or part of the vulva. This operation is called a vulvectomy. A partial vulvectomy removes only the affected area and an edge (or margin) of tissue around the cancer, which is called getting a clear margin. The modified radical vulvectomy removes the affected area and an edge of tissue for a clear margin. In this case, this usually includes removal of some of the lymph nodes in the groin area. If there s cancer in or very near the clitoris, it may need to be removed to be sure the cancer is taken out. The most extensive surgery is called a radical vulvectomy, which is rarely ever done. Here the surgeon removes the whole vulva. This includes the inner and outer lips and the clitoris, and often the lymph nodes that drain lymph fluid from the vulva. The vagina, uterus, and ovaries remain intact. Doctors often try to spare as much of the vulva as they safely can, as it s not often necessary to remove the entire vulva to get a clear margin around the cancer. After part or all of the vulva has been removed, women often feel discomfort if they wear tight slacks or jeans since the padding around the urethral opening and vaginal entrance is gone. The area around the vagina also looks very different. Women often fear their partners may be turned off by the scarring and loss of outer genitals, especially if they enjoy oral stimulation as part of sex. Some women may be able to have reconstructive surgery to rebuild the outer and inner lips of the genitals. It may help with the way the vulva looks, but the feeling (sensation) will be different.

15 When touching the area around the vagina, and especially the urethra, a light caress and the use of a lubricant can help prevent painful irritation. If scar tissue narrows the entrance to the vagina, penetration may be painful. Vaginal dilators can sometimes help stretch the opening. When scarring is severe, the surgeon may use skin grafts to widen the entrance. Vaginal moisturizers on the external genital area can also be very helpful and promote comfort. (See Vaginal moisturizers. ) When the lymph nodes in the groin have been removed, women may have swelling of their genital areas or legs. Though swelling just after surgery may go away, it can become a long-term problem. This condition, called lymphedema, can cause pain, a feeling of heaviness, and fatigue. It also can be a problem during sex. Couples should discuss these issues to decide what solutions work best for them. (If you want to read more about lymphedema in the groin or legs, you can get our document called Understanding Lymphedema For Cancers Other Than Breast Cancer. See the To learn more section.) Orgasm after vulvectomy Women who have had a vulvectomy may have problems reaching orgasm, depending on how much of the vulva has been removed. The outer genitals, especially the clitoris, are important in a woman s sexual pleasure. If surgery has removed the clitoris and lower vagina, then orgasms may not be possible. Some women find that stroking the front inside (bladder side) part of the vagina, about 1 to 4 inches inside the opening, can feel pleasurable. Also, after vulvectomy, women may notice numbness in their genital area. Feeling may return slowly over the next few months. Pelvic exenteration Pelvic exenteration is the most extensive pelvic surgery. It s used most often when cancer of the cervix has recurred (come back) in the pelvis after surgery or radiation therapy. In this surgery, the uterus, cervix, ovaries, fallopian tubes, vagina, and sometimes the bladder, urethra, and/or rectum are removed. If two ostomies are created, this surgery is called a total pelvic exenteration; one ostomy is for urine and the other is for stool. The vagina is usually rebuilt. Lymphedema may be a problem after surgery. (See Surgery for cancer of the vulva (vulvectomy), above). Because pelvic exenteration is such a major surgery, some cancer centers offer counseling sessions before surgery to help the woman prepare for the changes in her body and her life. Recovery from pelvic exenteration takes a long time. Most women don t begin to feel totally healed for up to 6 months after surgery. Some say it takes at least a year or 2 to fully adjust to the changes in their bodies. A recent prospective study of women undergoing pelvic exenteration supports this notion. This study found that quality of life declined right after surgery, but longer follow up (12 months later) showed that many women physically and emotionally adjusted well over time, with improvement in body image and overall quality of life.

16 If a woman has pelvic exenteration surgery, it doesn t mean that she can t lead a happy and productive life. With practice and determination, some women who have had this procedure can again have sexual desire, pleasure, and orgasm. Usually the outer genitals, including the clitoris, are not removed, which means a woman may still feel pleasure when touched in this area. Vaginal reconstruction after total pelvic exenteration If all or most of the vagina must be removed, it s possible to build a vagina with tissue from another part of the body. A neovagina (new vagina) can be surgically created out of skin, or by using both muscle and skin grafts. This new vagina can allow a woman to have intercourse. Skin grafts: When the vagina is repaired with skin grafts, the woman must use a vaginal stent. This stent is a special form or mold worn inside the vagina to keep it stretched. At first, the stent must be worn all the time. Then it s worn for most of each day for many months after surgery. After about 3 months, regular vaginal penetration during sexual activity or the use of a plastic tube or dilator to stretch out the vagina for a few minutes each day can help to keep the vagina open. Without frequent stretching, the neovagina may shrink, scar, or close. Muscle flaps and skin grafts: There are other ways to rebuild the vagina using muscle tissue and skin from other parts of the body. One way is to use flaps of muscle and skin from the lower chest and belly (abdomen). This method is called a VRAM (vertical rectus abdominis muscle) flap, and over the past few years it has been shown to work very well. The blood vessels and nerves for this tissue stay attached to their original site. This means that the neovagina may have more sensation and stay open more easily. The surgeon forms the flaps into a closed tube, which is lined by the skin surface. It s then sewn into the area where the vagina has been removed. Part of the muscle is used to fill in the space in the pelvis where organs have been removed. When the neovagina heals, it is much like the original in size and shape, but it will not feel or function the same. Still, different can be OK. An older, less-used method takes skin and muscle from both inner thighs. Other graft sites can also be used. A vagina that is rebuilt with muscle flaps and skin makes little or no natural lubricant when a woman becomes excited. A woman will need to prepare for intercourse by spreading a gel inside the vagina. If hair was present on the skin where the graft came from, she may still have a little hair inside the vagina. During sexual activity with a rebuilt vagina, a woman may feel as if the area the skin came from is being stroked. This is because the walls of the vagina are still attached to their original nerve supply. Over time, these feelings become less distracting. They can even become sexually stimulating. Care of the rebuilt vagina: A natural vagina has its own cleansing system. Fluids drain out, along with any dead cells. The rebuilt vagina cannot do this and needs to be cleaned with a douche to prevent discharge and odor. A doctor or nurse can offer advice on how often to douche and what type to use.

17 Women also notice that the muscles around the vaginal entrance cannot be squeezed together. A woman may miss being able to tighten her vagina. After the vagina is rebuilt, partners need to try different positions to find one that is best. Minor bleeding or spotting after penetration is not a cause for alarm, but heavy or increased bleeding should be discussed with a doctor. Orgasm after total pelvic exenteration With pelvic exenteration, all or part of the vagina may be removed, which can affect the nerves that supply the clitoris. Still, some women are able to have orgasms after this type of surgery, though it takes practice and persistence. Since the exact surgical procedure can vary from one person to another, it may help to speak with your surgeon about the full extent of the surgery before you have it. Ask what you can expect in the way of sexual function, including orgasm, after surgery. Sex and pelvic radiation therapy Radiation to the pelvic area often affects a woman s sex life. If the ovaries get a large radiation dose, they may stop working. Sometimes this is just for a short period of time, but often it s permanent. If a woman has already gone through menopause, she may notice little or no change. This is because her ovaries have already stopped making hormones. But if she hasn t reached menopause, radiation may cause sudden menopause with hot flashes and vaginal dryness. These problems are discussed in Dealing with sexual problems. Young women who get smaller doses of pelvic radiation, as they might during treatment for Hodgkin disease, may start to menstruate again as their ovaries heal. But with larger doses of radiation therapy, such as those used for cervical cancer, the damage is almost always permanent. Women who get radiation to the pelvis often become infertile. But no matter what the radiation dose, women younger than 50 should talk with their doctors before stopping birth control since it may be possible to become pregnant. During radiation, tissues in the treatment area get pink and swollen, and may look sunburned. A woman s vagina may feel tender during radiation treatment and for a few weeks afterward. As the irritation heals, scarring may occur. The thick walls of the vagina may become fibrous and tough. This means the walls might not stretch out as much during sexual excitement and activity. The scarring that can occur after pelvic radiation can shorten or narrow the vagina. A woman can often keep tight scar tissue from forming by stretching the walls of her vagina with vaginal penetration during sex at least 3 or 4 times a week or using a vaginal dilator on a regular basis. A vaginal dilator is a plastic or rubber tube used to stretch out the vagina. It feels much like putting in a large tampon for a few minutes. Even if a woman is not interested in staying sexually active, keeping her vagina normal in size allows more comfortable

18 gynecologic exams. And gynecologic visits are an important part of follow up after treatment. For more information, see Using a vaginal dilator under the section called Preventing pain during sex. Radiation to the vagina can also damage its lining, making it thin and fragile. Many women notice some light bleeding after intercourse, but they felt no pain at the time. Rarely, women get ulcers, or open sores, in their vaginas, which may take several months to heal after radiation therapy ends. Can a woman have sex while getting pelvic radiation? As long as a woman is not bleeding heavily from a tumor in her bladder, rectum, uterus, cervix, or vagina, she can usually have sex during pelvic radiation therapy. The outer genitals and vagina are just as sensitive as before. Unless intercourse or touch is painful, a woman should still be able to reach orgasm, too. But some studies suggest waiting 4 weeks after radiation to let the swelling and inflammation decrease, and to reduce the risk of tearing the tissues. A woman should follow her doctor s advice about sex during radiation therapy. Radiation therapy from a machine outside the body does not leave any radiation in the body, so your partner will not come in contact with it. Some women are treated with an implant. An implant is a radiation source put inside the bladder, uterus, or vagina for a few days. Intercourse may not be allowed while the implant is in place. Women treated with this type of radiation do not transmit radiation after the implant is removed. Sex and chemotherapy Chemotherapy, or chemo, is often given through an intravenous (IV) tube, which sends it through a vein right into the bloodstream. But some methods bring drugs right to a tumor. For cancer of the bladder, for example, the chemo drug is put right into the bladder through a small, soft tube called a catheter. Treatment like this usually only has a minor effect on a woman s sex life. But she may notice some pain if she has intercourse too soon after the treatment. This is because the bladder and urethra may still be irritated from the drugs. Women with tumors in the pelvis may get chemo by pelvic infusion. The drugs are put into the arteries that feed the tumor and give an extra-strong dose to the genital area. Since this method is fairly new, doctors do not yet know the long-term effects on a woman s sex life. Over the short term, the side effects are much like those of IV chemo. Another way of giving chemo is by intraperitoneal infusion (the drugs are put into the abdomen or belly). For cancers of the ovaries or colon, the space around the intestines may be filled with drugs in liquid form. This extra fluid causes the abdomen to swell a little. The drugs and liquid are then drained back out after a short period of time. The infusion can be somewhat uncomfortable and may feel a bit strange.

19 It s very important to ask your chemo doctor or nurse when you can have sex, what precautions you need to take, and how your treatment might affect your sexual function. Pregnancy and fertility during and after chemo If you think you might want to have children in the future, it s important to talk to your doctor about this before starting chemo. You need to know if treatment will affect your fertility. Many chemo drugs can damage the ovaries, reducing their hormone output. Sometimes the ovaries recover after chemo, but sometimes they don t. To learn more, see our document called Fertility and Women With Cancer (See the To learn more section for more information.) During chemo, women should use birth control to keep from getting pregnant. Ask your doctor what kind of birth control is best and safest for you to use. Many of the drugs used to treat cancer can harm a fetus. If you want to get pregnant, talk with your doctor about how long you should wait after treatment is over. After chemo, it may still be possible for some women to get pregnant. This is more likely to happen with younger women. Keep in mind that, even if you re still having monthly periods, it s hard to say whether you can get pregnant. Women who don t want to become pregnant should use birth control, even after having chemo. Early menopause with chemo Women getting chemo often have symptoms of early menopause. These symptoms include hot flashes, vaginal dryness, vaginal tightness, and irregular or no menstrual periods. If the lining of the vagina thins, there may be a light spotting of blood after penetration. Other chemo-related problems that may affect your sex life Some chemo drugs irritate all mucous membranes in the body. This includes the lining of the vagina, which may become dry and inflamed. Yeast infections are common during chemo, especially in women taking steroids or antibiotics to treat or prevent bacterial infections. If you have a yeast infection, you may notice itching inside your vagina or on the vulva. You may also have a thick, whitish discharge, and you may feel some burning during sex. Chemo can also cause a flare-up of genital herpes or genital warts if a woman has had them in the past. If you have a vaginal infection, see your doctor and have it treated right away. Infections can lead to serious problems because your immune system is probably weakened by chemo. Yeast infections can often be prevented by not wearing pantyhose, nylon panties, or tight pants. Wear loose clothing and cotton panties to avoid trapping moisture in the vaginal area. Wipe front to back after emptying your bladder and do not douche. Your doctor may also prescribe a vaginal cream or suppository to reduce yeast or other organisms that

20 grow in the vagina. Since your immune system may be weakened, it s especially important to avoid sexually transmitted diseases. If you are having sex with someone, it s important to practice safer sex from start to finish (use condoms or other barriers to avoid body fluids). Do this every time you have oral, anal, or vaginal sex. For more information about safer sex, you can contact the American Sexual Health Association (their contact information is in the To learn more section). During sexual intimacy, it s important to avoid touching the vagina and the urethra with anything that has been used to stroke near the anus. Lingering germs from the bowel can cause infection if they get into these areas. Chemo and sexual desire Women who are getting chemo often notice decreased sexual desire. Physical side effects, such as upset stomach, tiredness, and weakness, can leave little energy for relationships. Sexual desire most often returns when a woman feels better. If a woman is getting chemo every 2 or 3 weeks, her sexual interest might only come back a few days before she s due for her next treatment. After chemo ends, the side effects slowly fade, and sexual desire often returns to previous levels. Women getting chemo also tend to feel unattractive. Hair loss, weight loss or gain, and sometimes infusion catheters (tubes in the vein for chemo or other drugs that stay in for weeks or months) can make it harder to have a positive sexual image of yourself. Tips to handle these problems are discussed in the section called Dealing with sexual problems. Sex and hormone therapy Hormone therapy may be used to treat cancers of the breast and the lining of the uterus. This treatment starves the cancer cells of the hormones they need to grow. This can be done using medicines. For example, the drug tamoxifen keeps breast cancer cells from using estrogen. Other drugs exemestane, anastrozole, and letrozole keep testosterone from being converted to estrogen. A few women have their ovaries removed or have their ovaries treated with radiation to make them inactive. This is another way to deprive a cancer of the hormones it needs to grow. Any of these treatments will most likely cause symptoms of menopause. These include hot flashes, an interruption of the menstrual cycle, and vaginal dryness. In spite of these changes, a woman should still be able to feel sexual desire and reach orgasm. Sexual activity will not cause harmful increases in estrogen levels in the body.